Monday, June 16, 2014

How We Do It: Part XLV

There's a lot of crying going on behind the green sunglasses, and this morning there was crying without them. The morning was gray in the way of June gloom, and I had just dropped Sophie off at her summer school location, a middle school in the heart of Hollywood that I had visited many years ago when I was looking for a middle school for her. It's an ugly school -- maybe one of the ugliest schools you'll see in this part of Los Angeles, and I remember crying when I left it the first time. I had dragged Sophie out of bed this morning, fed and dressed her, something we are generally loathe to do before she's ready. On Saturday I got a notice from the school that if she didn't "show up," she would not be eligible for the four weeks of the summer program. It was a threatening letter in the way letters from the Los Angeles Unified School District are threatening. They are bland. They are mediocre. This is the sort of thing that frightens me -- the bland, the mediocre. I need something to do with Sophie for a few hours every day. I can't pay for everything. There are groups of mostly boys and young men in clumps at the entrance. I know some of them from Sophie's regular school. One young man screams wildly, flaps his arms and runs around in circles. When I pushed Sophie's chair into the tiny elevator to take her onto the second floor of the ugly building, I couldn't help but wonder what would happen in the event of an earthquake. I couldn't help but wonder why they would put disabled children into classrooms on the second floor. I remembered the room I was shown so many years ago at this same school, a trailer across a giant concrete courtyard, not a speck of green in sight. Condensation from the uniform cleaning factory across the street fell on my arm, and when I worriedly asked the aide what it was from, she told me that she thought it was bleach. When it gets too heavy, we bring the kids inside.That was a long time ago, but I couldn't help but remember it during the ride up the elevator. The doors opened, and I pushed Sophie into a bleak room whose windows were covered with landscape posters. The fluorescent lights blinked, and Mr. G introduced himself. He asked me what Sophie's problems were, and I told him. When Sophie's aide M walked into the room, I felt a rush of relief, but I still felt terrible leaving Sophie in such a place. Remember. I need something to do with Sophie for a few hours every day. I can't pay for everything. I can't give her a nicer life. There is nothing for these kids to do. They are, evidently, not worth it. The legion of disadvantaged kids that go to these schools, these ugly, impoverished schools, are not worth it. I don't know how they do it. I know how I do it. I drop my daughter off. I leave her with a beloved aide and strange Mr. G on the second floor of a building in a room that has no sunlight. I walk down the stairs and out the door and get into my car and drive off. I cry, openly, without sunglasses and don't care at the stoplights. All the way home. When I get there, I go into Sophie's purple room and make her bed. The sun is out now. I'll do my thing. I'll wait for her to get home at 1:00 and try to make it up to her.

Makes me so angry too--the disparity in schools in LA and all of CA. I tutor at at a wonderful school in Mecca, CA --one of the East valley's poorest areas, but was appalled when I first saw it.Then in your area there Venice HS--I'm sure you've seen it. So beautiful. I wanted to embed a picture but not sure how...

You CAN'T pay for everything. You simply can't. And she has to have someplace to go for a few hours. She simply must. So what can be done but what must be done but oh, how I wish it were different. I wish so many things were different. I wish you did not have to cry.

This makes me remember the farm Oliver once talked about wanting to start, so kids like his sister Sophie would have somewhere beautiful to go and have their spirits fed by their surroundings. As Mary says, you do what you must, and Sophie will not be the worse for wear because she comes home to you every day.

What sort of program, if any, is planned for the hours that she will be there? Is there an ISP or an IEP that they will follow, or does it fall under a different category of school? (I seem to recall a very recent mention of an IEP by you in a post).

I get the emotions of it and don't want to seem cold-hearted, you know I am not, but I am also practical and want to know more, because a place doesn't have to be beautiful looking to have beautiful people that may do some good. Besides, I'm already sorry for all the other shit in all our lives every single day, this day is no different so you know I feel for what you go through.

What I wanna know is, what can you find out about the possibilities she has there so that, armed with some of the new progress you have made recently with the freedom you have championed for her with the push toward MMJ, you can focus on feeling better about it and see what good she can pull from it, if some is to be had, and go from there?

Wait...did I take a a blow to the head today or something? Why am I suddenly Mr. Positive? I promise it's temporary.

blogzilly, a.k.a. Mr. Positive: I adore your comment but will also throw back my head and laugh maniacally. Yes, Sophie has an IEP and if the teacher follows it to the letter, that won't make up for the mediocrity of the IEP system, anyway. I DO agree that surroundings aren't everything -- we've been in less than ideal schools for Sophie's entire career, and the people in her classes, the aides and teachers and fellow students are a world unto themselves. Let it be known that I look on ESY as a babysitting service in a dungeon. Basically.

I know it's like looking for nuggets of gold in a turd, and hey, I fear that Bennett was put in a Quiet Room for half the day like I suggested in one of my posts, but I was just trying to be helpful and positive. I should try to avoid that. Not my style. ;)

I think I was just temporarily out of my mind because tonight Bennett has been so out of control with his aggression it is either look for the positive or put a gun in my mouth. While typing this I have been bitten twice, spat on and kicked. And yet now he is dancing like nothing happened. And wants me to join in that happy. I can't match that.

I've been thinking about this post all day. I thought let it go, what can I add, until i saw this evening , in a parking lot, a 'therapist' who treated two years ago my then 14 yr old son in our local school district in an infantile manner based on her immediate perception. my son has epilepsy, only epilepsy, but this therapist treated him with prejudice even though his special ed teacher and his own doctors (epileptologists, psychologist &psychiatrist)had described his excellent comprehension and desire to be treated like a "typical" middle school student. a "special education iep" based on "mastery" is anathema for some students with epilepsy, there are more therapeutic ways to teach students (of all "perceived" abilities) , that use the concept of assuming competence as a framework. loss of communication skills can happen to anyone at any time and I always think about this when advocating for my son...how would i wish to be treated if loss of any skills happened to me? my son was always a source of pride for us as parents everywhere we took him (which was everywhere) until anxiety from left temporal lobe epilepsy but more probably inappropriate "therapy" based on now 20 year old models literally created anxiety response ...our son went from a person everyone was happy to see (post operatively after successful LTL surgery people said "this is so touching " to three years later nothing to do with surgery but everything to do with lack of any or appropriate education- literally the same description of screaming running around in circles. ( anxiety can cause this type of response, and that "young man" is probably responding in the only way he knows how to a detrimental nasty summer "placement".) E, you provide S with a beautiful house, lovely clothes any teenage girl would love, a very loving family, and assumption of understanding. nice surroundings are important for everyone. the whole "special ed" system needs to change, radically, and soon.

Anonymous -- Yes. Thank you for this comment. It's taken me some time, but I am beginning to believe that the whole IEP thing/the whole shebang of special education needs to be reformed. I am beginning to realize that THIS is how I feel and that it's not bitterness and defeat, but the dawning of realization.

Dear E, Im getting ready to blow my cover. (not that its any big thing) You and Christy, all that both of you (and your husbands and other children by going public) and so many others here and elsewhere have done to advocate for our children, is inspiring me to become an advocate for not only reforming "special education" but also for...medical cbd-thca therapy? is that the correct term? In the interim, you know how indebted I am to you...xo

it must be so hard. still, you left her with a beloved aide, and in a couple of hours, she'll be back with her family. i remember once visiting the american kindergarten some friends' kids were going to - colorful, filled with art supplies, toys and books, music instruments and you name it - and feeling awful thinking of our local, public kindergarten, where the only supplies (including toilet paper) are whatever parents can spare. yes, the building and what's in it do make a difference. it can't be denied, though I don't know how crucial that difference is. beloved teachers and aides are certainly crucial, irreplaceable and hard to find. you need those hours, and she's in good hands, even if not in a sunny location. hugs.

I love poetry and discourse and gallows humor. I like to say that reading voraciously has been the only constant in my life. I am a fierce advocate for my daughter who has a severe seizure disorder of unknown origin, as well as for all special needs children. This is a place where poetry, politics, parenting, and disability intersect. Every now and then I curse and might offend you with my leftist politics. No apologies. Stop reading.
If you have trouble leaving a comment, I'm sorry! You can always email me at elsophie AT gmail DOT com

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